The Month in Review: Autism Speaks October 2011 Impact

Last month we tried an experiment… we attempted to recap the most important, relevant things going on around Autism Speaks to give you some insight into the breadth and depth of our organization; and to solicit your feedback. Thank you for your incredible responses and questions!

One of the more common questions we get (similar to the one that Kristine on Facebook posted) is, “What can Autism Speaks do to help my family today?” It’s a great question! We understand that families are struggling and are looking for help and information. Using an “evidence-based science” approach, we seek to deliver useful information, tools, and resources for families that they can immediately use, such as the 100 day and transition kits. Programs such as Advancing Futures for Adults with Autism provide resources across the lifespan. Not only do we provide a wide collection of tools, we also staff the Autism Response Team which is available to answer your questions via email, phone and online chat! They can be reached via email at familyservices@autismspeaks.org or 1-888-AUTISM2. Kristine, that’s how we help families today, while we continue to increase awareness about autism, advocate for more funding for research and services, and fund innovative research projects that are developing improved treatments and services for people with autism.

If you know of other things that might be helpful to another family, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Illustration by Gracia Lam

We’ve got an MD on staff! This month, we hired Joe Horrigan, MD to head up Autism Speaks’ medical research. His charge is to spearhead the development of new medicines and other treatments that can help people with autism communicate and learn better and address some of the medical conditions associated with autism, such as GI and sleep problems. Welcome, Dr. Horrigan! Look for him on our Science blog.

Leading the Way Autism Speaks is leading the way in developing an enhanced Autism Tissue Bank that will accelerate the discovery of the causes and new treatments for autism. Autism Speaks Autism Tissue Program (ATP) featured prominently in a feature story in the prestigious science journal, Nature, on the tissue bank shortage and how a small handful of organizations such as Autism Speaks are working to fill the void and speed research that can help individuals and families struggling with neurodevelopmental disorders such as autism.

World’s Largest Genome Library will be created by Autism Speaks and the Beijing Genome Institute. Autism Speaks and announced an agreement to create the world’s largest library of sequenced genomes from persons with autism spectrum disorders (ASDs). Multiple stories have appeared in the U.S. and China. The journal Nature interviewed Andy Shih on the agreement, as did Genome Web Clinical Sequencing.

Got Hours? Geri Dawson held her first “Office Hours with the Chief Science Officer” which featured guest host and renowned geneticist Steve Scherer, PhD, who addressed the question: What do the new findings in genetics mean for my family? Dr. Dawson will be holding monthly office hours and the next one will be on the topic of new approaches to early intervention, scheduled for the first week of December Read the transcript.

Employment October is National Disability Employment Awareness Month. We highlighted the Jay Nolan Community ServicesEmployment Tool Kit that was funded by one of our Family Services Community Grants. Other employment-related activities included question of the week on Facebook and live chats with:

New Toolkit Alert New Tool Kit Alert – in an effort to provide information and encouragement to all people with individuals with autism in their lives, Autism Speaks has several new Family Support Tool Kits. The purpose of each kit is to help teach family members and friends more about autism and provide resources and supports to each group. New kits include:

New York Autism Speaks Co-founders Suzanne and Bob Wright stood alongside Gov. Andrew Cuomo as he signed legislation making New York the 29th state to enact an autism insurance reform law. The New York law is one of the strongest in the nation, setting no caps on age or visits for behavioral treatments. Governor Cuomo credited Autism Speaks for its leadership role in winning enactment of the legislation.

California We (all of us) did it! A major campaign was launched to ask Governor Brown to sign SB.946, the autism insurance reform bill, into law. Because of California’s significance as the most populous state, we asked advocates in the other 49 states to participate by recruiting their friends and family in California to participate. Thousands of emails were sent into Governor Brown and over 1,000 people left comments on his Facebook page as well. Every possible method to get through to him was deployed, including a successful political cartoon campaign. The cartoon was printed as 750 posters and distributed at the Oct. 9 Sacramento Walk, the day the bill was signed by Governor Brown making California the 28th state to enact reform.

Michigan Our attention has now turned to Michigan where we are urging the state’s legislative leadership to move a pair of autism insurance reform bills before the year’s end. We need your help! If you are in Michigan, or know someone who is please text “AVotes” to 30644 and we’ll alert you when we need your help!

Autism Law Summit The 6th Annual Autism Law Summit attracted 100 activists from 33 states to Salt Lake City. The event highlights efforts to obtain insurance benefits for necessary autism treatments through legislation, litigation, and encouraging employers with self-funded plans to include the benefit for their employees. During the summit, we celebrated Arkansas, California, Rhode Island, Virginia and West Virginia for enacting reform bills during 2011.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

60 Minutes Apps for Autism: image from CBS

Apps for Autism The producers of 60 Minutes consulted extensively with Chief Science Officer Geri Dawson and VP of Scientific Affairs Andy Shih in preparing a special segment on autism applications for communication, which aired Sunday, October 23rd. The full show can be found on the CBS News website.

Parents Magazine The October 2011 issue of Parent Magazine featured an interview with Autism Speaks Chief Science Officer Geri Dawson in an article entitled “Understanding Autism.” The piece encouraged parents to pursue an early diagnosis of autism in their children and highlighted the beneficial outcomes that early intervention and treatment can bring to a child diagnosed with autism. To read an excerpt from the article, click here: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diagnosis/

Please make your families aware of potty/toilet training information.
Children with autism can absolutely be toilet trained. With the purchase
of my book I will provide a free phone consultation if needed.

I have a son who is 19 and has autism, he is a high functioning autistic, very smart.
due to his behavior he was placed in a group home, where he is doing amazing. I see him every week and talk with him on a daily basis. He is doing well in school and has a bright future. He is my hero. As a parent, be the strongest adovate for your son or daughter.

Good idea-
AS discussing what they are doing to help families now
1)The insurance victories are terrific. Here and now- so important!
2)Practical help for adults and employment also so welcome.
3)Autism Response Team- great idea to help families in crisis!

Genome Library and Tissue Bank do not help children living now.
AS Science needs to place a lot more emphasis on here and now biomedical interventions.
Go to ARI and NAA conferences-make an effort to connect w/ community of families, AS has no biomedical expertise
I see AS science going to South Africa, Holland, Sweden this month alone but no one was at the ARI conference, no AS science people at NAA conference, no open forum, open to the public AS science lectures/ workshops. Endocrine workshop good start but now open to public regarding participation. Don’t hide.

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